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Sunday, 31 January 2016

On the ME front I've been doing a bit better lately, but the flip side of this is that I've been getting a few more migraines.So today I got one of these Daith ear piercings done. I read on the internet that some people find they help with migraine (so it MUST be true huh?).

Anyway two of my daughters got the same piercing with me for solidarity, and it amused my family no end that I had ventured into a Tattoo Parlour to get this done!

So I've no idea how or why this might work biologically, but if it does reduce the number, severity or duration of my migraines then I won't argue.

If it does nothing - well if I grow to like it, then I can leave it there.

I'll report back in a few weeks.

PS For those of you who are interested in heart rate monitoring: I was expecting a significant spike in HR during the time this piercing was getting done, but that didn't happen. In fact my heart rate went higher eating my breakfast this morning than it did getting my ear pierced! Weird!

Saturday, 9 January 2016

The paper used female subjects, diagnosed with CFS (CDC criteria), and compared them with healthy controls (1). In a nutshell the subjects were asked to walk and then perform various additional tasks.Unsurprisingly the patient group were less able to cope with the multi-tasking angle of the tests, and were more likely to stop walking when asked to do an additional task (eg adding two numbers).

Obviously these patients were not in the severe category, but perhaps something like this could be adapted as a marker for assessing patient well-being?

Recently I have been monitoring myself, by recording heart rates, daily steps and so on - all with the idea of searching for that illusive "something" that would give me a measure of how I'm doing on a particular day.

In my experience the time I'm most likely to harm my health by doing too much, is when I am "dangerously okay" - ie when I think I am doing better than I really am.

Yet, despite all my number-watching, one of my best markers for gauging how I'm doing in any one moment, is how I cope with a certain step on the way to the bathroom at home!

The single step down is followed immediately by a 90' turn. I know when I am struggling, because on those days, I can't do this turn in one fluid movement. I need to concentrate first on the step, then on my balance when I land, then on the turn, and then on starting to move again.

There are some days when I feel reasonably well and think I'm "okay", but then I am surprised when this step & corner requires more care than I was expecting. It's a subjective measure of course (and I've been known to berate myself for being clumsy when it happens), but having read the paper linked above, I now think perhaps there is something really useful in this.Would there be a way to use a co-ordination / multi-tasking test to assess current ability?

I think ME patients all recognise there are times we simply can't multi-task. This happens with many activities - walking obviously, but also eating, writing, talking or what ever. Each task can often demand much more attention than a healthy person would normally give to such a basic activity.

It is as if these activities, previously accomplished on auto-pilot, suddenly demand more of our conscious attention, and so sap our ability to do more than that single action. And the effect becomes noticeably worse after any type of exertion.

We can be quick to blame ourselves for our clumsy, brain-fogged, un-coordinated abilities and grumble about having poor multi-tasking skills, but maybe we should be watching for these times and using them to judge when we are getting "dangerously okay" and in need of some extra rest?

I have used the word "clunky" to describe my reduced co-ordination at these times, because it is as if all my conscious body controls are under-performing. Yet that "clunky" feel is also a big warning sign, even if I am feeling otherwise okay.

Sadly, the most severe ME patients will experience these problems almost constantly. For people with severe ME, it seems that all their energy is directed towards life processes with little to nothing left over for extra.

Yet the rest of us, who still have some flexibility with our activities, should seriously listen to the warning signs our bodies are giving us, and recognise when we should NOT push on regardless.

Unfortunately the bio-psycho-social school for ME suggests that these warnings can be ignored - they suggest these signs are a result of de-conditioning, and that we will improve if we exercise more. They also imply that we are over exaggerating the importance of our symptoms. I disagree on both accounts.

Studies like the one linked above, many not tell ME patients anything they didn't already know, but they do serve a purpose. They demonstrate that our bodies are not performing adequately, and it is my hope that studies like these may lead to improved ways of objectively measuring the effects of ME. Such measures could also potentially lead to scientists developing ways to safely measure treatment responses.

Another study I saw, that seemed to offer a potential way of measuring our functioning, was an eye test (2). This study showed that we were less able to track moving objects accurately than healthy controls.

I wonder are there computer tests that could measure our co-ordination and multi-tasking abilities? Would such tests be useful to patients and / or scientists measuring ME function? Would we need a specialised test for this? Interesting to think about.

Until then......

Our biology gives us warning signs. I think we should pay attention to them.

******

Edit: Some how I missed part of the discussion in the paper that includes the following paragraph:"Current rehabilitation guidelines for patients with CFS prescribe graded exercise therapy (GET) and cognitive behavioral therapy. If the present findings are confirmed by others and if future work shows that the observed reduced gait automaticity in patients with CFS is of clinical importance, adding gait automaticity training to current rehabilitation programs for CFS seems warranted"
I am not sure that the work done in this paper suggests that patients need more rehabilitation! I would prefer they suggested that more research was required to find out why we have such problems at all.....

Another after-thought:The blog Infinite Daze has also written on this gait automaticity paper. Worth a read:Infinite Daze: Gait and CFS/ME - includes details of a simple test involving clicking a pen whilst answering questions.